First published in 'InTouch' magazine - official publication of Muscoskeletal Physiotherapy Australia, a National Group of The Australian Physiotherapy Association (APA), Issue 2 2021, pg.15)
After corrective surgeries for severe scoliosis aged 11 and 16, I spent over 20 years tumbling through the medical roundabout seeking cures, solutions and even a reason for my pain. Throughout this time, I have experienced many different clinicians. One might say, the good the bad and the ugly.
Around 10 years ago, the clinicians at the Barbara Walker Centre for Pain Management at St Vincent’s Hospital in Melbourne helped me turn a corner. They didn’t cure me or fix me. There was no magic wand waving. We worked in partnership, exchanging expertise and experiences. First the very first time, I was shown how I could help myself. And it was life changing. Implementing the many self-management techniques we developed together, I now live well with chronic pain.
Now, I work in the not-for-profit sector where we constantly talk about engagement and partnering. Organisations often have limited resources but will come together to address the complex and intersectional nature of social issues. Sometimes, these partnerships are formalised with a Memorandum of Understanding (MOU). So, when I was asked to write this article, I reflected on how the engagement and partnering required for an MOU could be an excellent analogy for an effective patient-clinician relationship, especially where the patient is dealing with chronic pain. So, let's break it down…
First, let’s listen.
Before you get to formalising a MOU, there is a critical establishment phase in any engagement work. In the past, just telling my story and the impact of my pain left me feeling vulnerable (actually I was usually a crying mess). But when I have felt heard and believed and also received some acknowledgment of the severity of this impact on my daily life, I have felt engaged and ready to get to work.
Recently, in an initial appointment after I gave my well-versed backstory, my clinician acknowledged my hard work and told me I was the best person to understand and mange my condition. I often keenly felt the power imbalance when working with a clinician where this was not genuinely acknowledged.
I recognise that sometimes this is not always possible. Time to listen and share in the allotted time of an initial appointment can be challenging. So this can be where some pre-work can be helpful. I have been to pain management clinics where clinicians provided pre-admission surveys and I have also proactively provided my medical history or other relevant information. A helpful online resource here is Pain Train – My health summary which provides a platform for people with chronic pain to provide access to their healthy information before an initial appointment.
The Who, Why and What factor.
For any relationship to work effectively there needs to be the give and take of both parties. I believe that managing expectations forms a large part of a successful two-way partnership. By understanding why each party has come to the table and what they expect to take away from the interaction – there can be no unmet expectations.
I think we also sometimes need to be honest and just agree that magic pills and cure-all’s rarely exist so let’s scrap “No Pain” from the Wishlist. This was my biggest problem in early days. I was expecting a clinician to cure or remove my pain - for good. I was often told to try this technique, this exercise and when I did (sometimes only a handful of times) and the pain persisted, I gave up. Being really clear on what you will do, how will you do it, how often etc., can springboard astounding change. If this is not clearly articulated and agreed early in the relationship then how will the partnership be able to demonstrate its success?
Also important is a very clear understanding of why you are working together – what is driving a need for change. This was huge for me. After an emotional conversation with my husband, I realised the impact my pain was also having on him – he called them his “darkest days” and that was a huge motivational force for me to change my approach. I was not going to inflict those dark days on my family or myself again.
Proactive and curious.
When both patient and clinician have an open mind, are curious and are committed to trying new things, learning new things, there can be some real change – even those sought after “Ah-ha!” moments. When rigidly attached to pre-conceived ideas, dogmas or stereotypes, growth and development is unlikely.
After a great initial consult, a clinician suggested something to me which was a bit left of field, something I had never considered. He presented the information as an option for me to consider – almost like he simply was wondering aloud. He suggested I go home, think about it and we talk about it next time. He also followed up with an email of resources to back up his suggestion. This appealed to me with my academic research background. He was proactive but gave me the space and freedom to respond rather than forcing a knee-jerk reaction (which probably would have been to brush him off, dismiss or flat out refuse his suggestion).
Similarly, when I was working with clinician in the pain management clinic, we were shown gentle exercises, new ways of thinking about our pain. Much of it was so different to the 20 years of baggage I had brought with me. I was terrified I would never be able to change. They didn’t just explain these new techniques, but showed me how to use them in daily life over the 3 week course. Many times, I had been blown off with a throw away line “Oh, you really should just pace yourself”. During my pain management course, I was shown what pacing really means – shown from scratch – testing pain thresholds, setting up baselines etc.
I actually had a light bulb moment in the hospital toilets. Unfamiliar with opening a door outwards, I would push and slam into the door. It’s embarrassing to admit but this went on every time I went to the toilet for the first week. One day, early in the second week, I stopped at the door, smiled and...pulled. In a blinding flash of clarity, it became obvious that habits can change. Your mind does learn new tricks. This gave me hope. If after 20 years of responding to pain with the same automatic unhelpful thoughts (which I have learnt only amplify my pain), then I do have the power to change these thoughts.
Get specific.
The crux of the relationship is how patient and clinician will interact – what work will be undertaken, together. Once we have moved passed the expectations of the interaction. Determining an agreed set of goals, it a great starting point (and they need to be SMART – specific, measurable, achievable, realistic and with a timeframe). By determining these goals, expectations previously determined can be met.
A part of being realistic was recently well demonstrated when a clinician I was working with gave me a “flare up” pass. We had set up a set of exercises to work on over the next week and he said to expect a flare up. Something about calling this out up front made me relax. And when the pain did escalate later that week, I wasn’t surprised, and I did not give up. I just tried again the next day. I think if he had not mentioned it, I might have been quick to jump to a conclusion that the exercises had caused the pain and I should stop them.
Reassure.
Often partnerships work when both parties regularly share common experiences to establish familiarity and a sense of common purpose. I have experienced the calming sense of reassurance that has come from learning about pain science and common experiences.
Clinicians see a lot of people dealing with chronic pain and they would hear the same laments and frustrations. Letting patients know that the dark and depressing thoughts and reactions they are having to their pain are common can be immeasurably comforting and reassuring. I was very relieved to know I was not crazy. Chronic pain is a very raw experience – many people react in the same way.
I have long battled with fear when it comes to pain. Fear that I have caused my pain, fear that whatever I choose to do will impact on my pain and fear that my pain will never change or go away – fear that it might even get worse. All the “what ifs” that a scared brain that is trapped in catastrophe can dream up.
When clinicians have shared pain science information and talked me through what is currently happening with my condition, it has helped to allay these fears. Recently I mentioned this fear to a clinician. I had suggested this “new” pain was different and I was concerned something had happened, worsen, changed. He asked a few simple questions about nerve conduction, bladder and bowel function and he quickly ruled out serious impacts. After that I felt immense relief and the fear almost immediately dissipated.
Keep talking.
Chronic pain is complex and constantly changing due to the many biopsychosocial factors impacting on it. Part of keeping a good relationship going means communication. Updating, exploring, but importantly to be flexible to adapt to the changing circumstances.
I have always felt well supported when I can tell a clinician things are not working and we need a new approach. Its easier to tweak a program than to be constantly feeling the pressure of it not working. After telling a clinician a few years back that the program he had given me was just too hard to fit into my daily life, we made some changes. He gave me some exercises to do during the day at work so my early morning routine was less pressured.
Focus.
I have learnt through many years of difficult times to focus where I want to go, to focus on what I can do, not on the many impacts of my pain. By focusing on what I wish life was like or what I want to do but am physically limited, all I end up feeling is frustrated, resentful and depressed.
Formalising the relationship, expectations and goals in a clinician-patient relationship with an MOU could help to concentrate and retain this focus. In the long term, when a patient may need to acknowledge and accept pain as a part of their life, this direction can be invaluable. Having a supportive clinician who can help maintain this positive focus – especially when things get hard, can be the difference between keeping you on track and falling back into unhelpful behaviours.
Mandy Mercuri lives in the foothills of the Dandenongs with her family. She loves to share her experiences about self managing chronic pain (Take Hold of Pain blog) and being mindful (Just Be – the mindfulness in daily life blog). Writing has played a big part in her professional (PhD, academia, report writing) and personal life (blogging, public speaking). She believes in the transformative power in reading a great book that touches your heart. Now, Mandy is taking a year off to manage her health and to write - her adult gap year. She is writing her first novel, ‘Just be’, about woman whose life has been thrown up in the air when she makes an unlikely friendship with homeless man who agrees to teach her mindfulness then their families become entangled. It’s a tale about unconditional love, forgiveness and not just knowing who you truly are but having the courage to be that person. Contact Mandy via Twitter here.